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Monday, May 19, 2014

Had my first social event since that crazy barrage of hallucinations which turned out to be seizures. I was nervous because I knew it would be a lot of stimulation, lots of emotion (one of my best buddies was getting married), lots of music, and talking, and being "on". But I was giddy, and excited to get to be there. It is such a joy, and a treat, to be present when people you love commit themselves. When they open their hearts, sharing their dreams, and most intimate feelings. This wedding in particular was incredibly organic, and honest. Listening to their vows, shared by Lauren's childhood rabbi, gave us an unfiltered view of their all encompassing partnership. It left everyone feeling confident, and grateful for the love that they have for each other. Unfortunately, some weddings are just weddings. A party, food, a ceremony, dancing, but when you get the chance to witness deep happiness, the kind where you watch the bride and groom share knowing glances from across the room throughout the night, sneaking smiles when they think no one is watching, noticing that there is a connection so deep that even within a crowed room, that those two might as well be alone. It's exactly what you want for people.

I've been on such a regimented protocol that I normally either have supplements, liquids, pills, nasal drops, sublingual applications, powders, etc. all throughout the day. My tools include a digital pocket scale, a syringe, a couple of droppers, a teaspoon, and a measuring cup. Some of it has to be refrigerated, others have to be kept in the freezer. It works out to be something every 40 minutes. Some have to be alone on an empty stomach, others need to be with fat to absorb. Some have to be 30 minutes before another because it potentates the effect. It is detailed, and tricky, and it keeps me tethered to our house which may make me crazy at some point, but right now I'm just grateful to have mitigated the seizures. And, hopefully above that, keep tumor growth at bay.

The relief of having a clear mind is exhilarating; it makes me feel alive, and confident, and clear. Although we had to leave the wedding reception early (pushing back much of my schedule as we left over an hour later than we should have), I figured that a special occasion warranted the risk of deviating. And it was certainly worth it! I'm still trying to rest, and take it easy, and get back to a normal state. I don't think I will ever absorb the necessity of rest, and truly understand my body's limitations.

I have acquiesced, in life lately, submissively opening my soul to the reality that I need to heal my brain, my body, and my being. And that means focusing on my protocol. So my life is that schedule of things every day, all day. It doesn't feel that weird until I find myself in a crowded room of friends, and family of friends, and friends of friends and I see that they are living, and moving forward, and planning trips, and caring for their kids, and having babies, and planning for the future. And although I appreciate the compliment of how people say to me, "Wow, you look great, it's as if you there's nothing wrong!" They see my shell, but they don't know my struggles, my real life. I wrote this to my Susea in an email recently, "You know what the isolating thing is about cancer? Unless you're bald, no one sees." Of course, for those who read the blog, you guys are familiar, but most of the people we know don't read the blog. They don't know how hard we work. Or how deep in the trenches we live. And that's okay. I don't know about the intimate details of their lives either. It just feels weird to have such an overwhelmingly intense lifestyle that essentially goes unknown. Worse than that, we get comments like, "Isn't nice to not have to worry anymore." Dan and I smirk at that kinda stuff. People don't know, and they mean to be nice, but those words create a deep crevasse, almost the shifting of a tectonic plate, moving us further and further from people around us. It's a survival mechanism. In life, people yearn for connection, for shared understanding, to be accepted, and supported. And when people can't understand your world, your trials, your reality, it makes you feel even more alone.

It's another realization for me to remind myself that I should never assume things about others. We all have things going on. It's important for me to continue that mental dialog because often, I feel very isolated. I see myself, like at that wedding, as an outsider, a person whose brain is engulfed in tumor thoughts: Oh man I'm two hours late for my dinner Poly-MVA; Shoot, I need to take that baggy of pills in my purse because they will probably be serving food in 30 minutes;Oh no, I'm sitting below a big speaker, this is too loud for me, my
brain is getting overwhelmed, is this going to cause a seizure?; Okay, we really gotta go, I don't want to leave yet, but I'm an hour late for my chlorotoxin. There is a constant inner dialog that is stressful. It keeps me in my own bubble. If I didn't have the bubble, though, I wouldn't be as successful in my schedule. At home it's all written down so that I don't deviate. I set timers, and have notes taped in specific places. It keeps me in line.

I'm relieved to not be bald again. I am relieved that I can hide my trials. I am relieved that I can walk amongst the populous, hidden, chameleoning into the backdrop. But what I've realized is that whether I'm bald or hairy, it does not change the fight. It does not lesson the amount of effort. It does not make it easier. The odd thing is, I thought it would.

5 comments:

You are right , no one else can really know how it feels to walk in our shoes! I am a widow, I look fine, I act fine, but am I? It has been over three years now, to most people that is enough time to "get over it". Others mean well, but they can't know our thoughts, struggles, feelings, they just are not able. I do not hold it against them, how could I, I can't begin to know how it feels to walk in their shoes either. I think sometimes it is like being in the lane next to them on the freeway. We are in the same place, at the same time, but yet have such different views, and thoughts, and lives. All we can do is take care of ourselves the best way we know how, and fit in the best we can to the worlds of others. You are doing an amazing job at both, and I know it isn't easy! Just please know you have so many people rooting and praying for you. Keep your hope alive, do not let cancer defeat your beautiful spirit! Do breathe deeply and inhale all of the love in your life and know that is the greatest gift of all. God is blessing many people through you, I am one of those people and have never even had the honor of meeting you. Blessings to you sweet Jessica.

Thank you for your reply, for sharing your story. It's comforting to know that we're not alone, even though we sometimes feel that way. I wish you hadn't lost your love, though. I'm so sorry. I wish I could give you a hug. You said it all so well. Everything I feel. Thank you. I'm breathing deeply right now, in your honor, and smiling your way.

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I am so grateful for the GoFundMe account that our friends set up. They started it last fall, because I stopped my treatments because of lack of funds, and now, possibly because of my lapse, I have a brain surgery scheduled for March 3rd, Dan's birthday. We are hopeful that our neurosurgeon will be able to remove the majority of the three brain tumors. But having it be out of state, it's complicated financially, and we are very thankful for your donations, and your prayers!

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This blog is intended to be informational, and hopefully at times, educational. It represents solely my personal opinion. This blog and my opinion are not meant to be construed as professional medical advice for any specific person or patient or condition. Qualified and licensed healthcare professionals should be consulted before considering or using any therapeutic product or drugs discussed in this blog. Definitely work with doctors and specialists to find your own cocktail approach. Please don't take my word for anything, do your own research.

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